Social journalism project Croakey is taking a unique approach to gathering consumer input on health with CroakeyGO. The project brings people together to walk and talk about health issues and to collaboratively produce social media and other editorial content.
In August, North Western Melbourne Primary Health Network (NWMPHN) supported a mental health CroakeyGO, #NavigatingHealth, following the footsteps of a patient journey through the mental health system. Consumer feedback gathered during the partnership project will help guide mental health commissioning and inform the PHN’s Regional Plan for mental health.
The event involved about 100 people from diverse backgrounds. The group stopped at four different locations: a public hospital ED, an Aboriginal health service, a community health service, and a general practice. It looked at the issues faced by different parts of the mental health system and how a person’s care journey is impacted by where they first seek care.
There were speakers at each stop, but importantly all participants were given the opportunity to be interviewed about their own issues and concerns. This was supplemented by hundreds of people engaged with the event and conversations via social media.
“First and foremost, we wanted to listen to our community about what they think is needed in our mental health system,” Mary-Anne Toy, NWMPHN Director of Strategic Relations, said.
“What was working well, what was not working, and how we could make the system fairer and better. We wanted to get as many perspectives as possible. We also wanted to share our work and approaches and build new connections so that we can work together to create better care for our community.”
NWMPHN recognised that collaborating with CroakeyGO would have the potential to have greater impact, reach and engagement than previous meetings or consultations.
“It went even better than we hoped. We had twice as many people as we’d calculated would turn up in real life. And people loved participating, from our own staff to consumers, carers, service providers and academics. From people who knew us to people who didn’t really know what a Primary Health Network was but turned up because they cared about our mental health system,” Ms Toy said.
“What surprised us was how much our own staff loved the event. It reminded everyone that we’re all in it together and how important it is to get out ‘on the ground’.
“Listening to people at the four partner stops talk about what they did was illuminating – even for those of us working in the field, there’s so much we don’t know about the system and hearing people’s stories is always powerful and humbling.”
Victorian Aboriginal Health Service (VAHS), St Vincents Hospital, Drummong Strett Services and Carlton Family Medical photographed at Fitzroy on Thursday,01 August 2019 in Melbourne, Australia. (Norm Oorloff/1826 )
This article was originally published in Health Matters
For six months of 2017, HCC has worked with the WA Primary Health Alliance and Curtin University on a project to explore consumers’ experience of chronic disease and what kind of care they are seeking from the GP and community based services.
People living with chronic health conditions and a range of community-based health service providers came together at a forum on Friday 1st December 2017 to hear the outcomes of a focus group study conducted by Curtin University and Health Consumers’ Council in 2017.
The aim of the study was to better understand the current system of GP management of long term conditions, from the perspective of consumers. This information will be used as part of an overhaul of the primary care system being conducted by the WA Primary Health Alliance (WAPHA) in conjunction with GPs.
Forty six consumers were involved in the focus groups which met in Wanneroo, Midland, Armadale, Rockingham, Bunbury and Albany. They represented a range of ages, backgrounds and health conditions but agreed on many key points:
Consumers want a long term relationship with a GP who is a good listener and will work with them in partnership
Bulk billing and reduced up-front costs to care helps consumers to get the care they need
Chronic condition care plans are not well promoted and don’t deliver enough care – especially to people who have more than one conditions
There is a role for specialist “care coordinators” to support better management of different services
People with chronic health conditions should be treated differently within the GP system to people who only require occasional GP contact
You may have heard about Press Ganey, the patient experience survey being implemented in Perth hospitals including Royal Perth, Bentley, Fiona Stanley, Sir Charles Gairdner and Osborne Park Hospitals. The survey is sent out to patients two weeks after they have been discharged home and seeks feedback on a range of different measures. The question was asked about how this ensures a diverse response, e.g. from Aboriginal and non English speaking patients.
At our most recent Consumer Advisory Council Roundtable, we had their CEO, Amanda Byers provide a presentation on how their survey works. For those who were unable to attend, a video of the presentation is available below. It is just under 45 minutes long. The powerpoint is available here, however it is well worth watching the video as it makes sense of the slides’ information.
The third slide has a useful reflection on the suffering that a patient will undergo when in hospital. It notes that there is suffering unavoidably associated with both diagnosis and treatment. The avoidable suffering caused through defects and care in service is where the Press Ganey survey focuses. Press Ganey also highlighted that it was a validated tool which means it has had psychometric testing to ensure a reliable result.
Once the survey results are returned to Press Ganey they are analysed and the reports provided to the hospital. This process can see about a three to six month delay between the healthcare episode and when the feedback is provided to the healthcare service. Some hospitals such as Royal Perth are also implementing questionnaires that Community Advisory Council members undertake with patients to ensure a quicker response when issues are identified. The presentation did highlight however that service improvement can be supported through Press Ganey surveys using the example of a large hospital in Asia which transformed their health service in nine months. Despite this health service’s initial concerns about how well this would work, their performance improved significantly.
Day Two began with a Welcome to Country from Olman Walley, prior to the Aboriginal Patient Experience Panel. Panellists included WA Health’s Wendy Casey who is Director of Aboriginal Health Policy Directorate, Michelle Nelson-Cox, Chair of the Aboriginal Health Council of WA, Consumer Miranda Farmer and General Practitioner and Professor Paula Edgill. The panel was chaired by Glenn Pearson, Head of Aboriginal Research at Telethon Kids Institute. It was an interesting blend of the viewpoints of Government, the Aboriginal Community Controlled Health Sector, a frontline GP and an Aboriginal woman whose story highlights there is still some way to go.
Author Talk – Kate Ryder
Kate Ryder has written a book called An Insider’s Guide into Getting the Best out of the Health System. Kate is a Registered Nurse who lives and works in NSW. Her book was launched in early 2016 and covers many useful topics to support health consumers to have a safe health experience. You can find out more about her book here.
Lunch Box Session – Involving Consumers in Organisational Governance
HCC’s Pip Brennan, Steph Newell and Louise Ford facilitated this interactive session which reflects the importance of involving consumers at every level of the health service. Key definitions of governance were considered, and the fact that our National Safety and Quality in Health Service Standards one on governance, and two on partnering with consumers underpin all other standards. The audience was asked to provide examples of how consumer partnerships within the governance levels of organisations are occurring or can be planned to be strengthened. The session closed with key points to consider when involving culturally and linguistically diverse consumers in health service governance.
Panel Discussion – Measuring the Patient Experience
The Final Patient Experience Week panel discussion was on the key topic of how you measure the patient experience. Panellists, from left to right were; Lorraine Powell – Consumer, Karen Lennon – WA Health, Candice Patterson – WA Health, Melissa Vernon – WA Health Country Services, Todd Gogol – WA Health Royal Perth Hospital, Petrina Lawrence – Consumer and Carer, Learne Durrington – WA Primary Health Alliance, Anne Williams – Murdoch University. Missing from the picture is Patient Opinion’s Michael Greco who spoke during the discussion but had to leave to catch a plane. The panel discussion was filmed by West Link TV and includes final comments by Majok Wutchok.
Westlink is available to country viewers who receive their Free to Air TV via satellite on Channel 602 on the VAST service. The debate will air on Monday, Wednesday and Saturdays at 10.30 and 3pm on these dates: June 6,8,11,13,15,18,20,22,25,27,29.
Health Consumers Council Excellence Awards
Patient Experience Week events concluded with our Excellence Awards. For all the details about the winners and nominees, see this page.
On Thursday 28th and Friday 29th April the Health Consumers’ Council hosted our inaugural Patient Experience Week (PXW) with a series of events at The Boulevard Centre in Floreat. We are excited to be finalising our new HCC Podcast of those events we were able to record, and in the meantime, here are some event highlights for you from day one of PXW.
The Welcome and Introduction
Olman Walley gave a Welcome to Country on both days, providing his own unique and gracious welcome in language and with music. His didgeridoo playing was evocative and on the second day, and veered off into rap. Sense of humour that one!
Pip Brennan presented on behalf of the HCC and thanked the sponsors Illuminance and Empower ICT who provided essential support for the event. Pip then spoke about how HCC supported consumers individually through advocacy and supported health reform through consumer representative training and sector support. The importance of supporting the health sector in working with Aboriginal as well as Culturally and Linguistically Diverse communities was highlighted. Pip also referenced the December 2015 Clinical Senate Debate on the Patient Experience. She particularly highlighted the four Recommendations from that debate which were endorsed and therefore WA Health has a mandate to ensure they are implemented. The Recommendations are:
WA Health should introduce a system-wide, consistently branded ‘Patient First’ program that drives the patient experience agenda and under which all key patient experience improvement programs are measured, with results publically available.
In consultation with consumer and carer peak bodies: •A statewide definition of a great patient experience is developed that incorporates a value-based, patient-centered approach. WA Health, as system manager, is to ensure this is adopted by the whole of Health. •Patient experience tools are developed or selected for use that reflect the indicators that matter to patients.
The Senate recommends that a consumer is appointed as a member of State Health Executive Forum (or its equivalent post legislative amendments to create Health Service boards).
The Senate recommends Chief Executive Officers visibly and actively lead consumer partnership programs and have related Key Performance Indicators (KPIs) in their performance agreement with their boards.
The Director General of WA Health formally opened the launch and stated WA Health’s commitment to patient care, patient safety and providing the best patient experience. He highlighted that it is essential to have an organisational culture where staff feel valued and respected, and patients are treated with dignity and respect. In order to achieve that, consumers must be involved in strategic processes that guide the planning, design and evaluation of health services. He referenced the December 2015 Clinical Senate Debate on Patient Experience and highlighted WA Health’s commitment to developing a Compassionate Care initiative. Compassionate Care is about the way in which people relate to each other. This means the way staff treat each other as well as they way they treat patients. His powerpoint can be accessed by clicking here.
The Director General closed with these statements:
The patient journey is unique to each person. Every interaction with patients and their families impacts on their experience.
We must transparently measure the patient experience.
Lessons learnt – through both positive and negative feedback – can be used to improve health services.
A system-wide definition of a great patient experience should be developed.
Consumers must be involved in the planning, design and evaluation of health services.
It is essential to have an organisational culture where staff feel valued and respected, and patients are treated with dignity and respect.
This starts with our behaviour and our values.
We were then joined on Skype by Dr Karen Luxford, Director of the NSW’s Clinical Excellence Commission. The gremlins were with us at this point, so the Skype presentation didn’t record. After Patient Experience Week was over, Karen kindly agreed to be interviewed about the Clinical Excellence Commission, their Patient Experience Week events and why the patient experience movement is important. You can listen to that audio by clicking the link below:
The final presentation of the launch was by the irrepressible Jason Wolf, CEO of The Beryl Institute. The Beryl Institute is an international community of health professionals, consumer, carer and community members dedicated to improving patient experience in health care. His presentation was highly motivating, and can be watched by clicking the arrow below. Alternatively you can view his slide presentation here.
The Actors – Two Sides to the Patient Experience
Straight after the launch, Agents Improvocateurs took to the stage to enact a patient journey scenario, inspired by stories HCC hears from consumers who seek our advocacy assistance. In the scenario, a patient had been stung by a bee near her breast and attended the Emergency Department and was then put on a children’s ward where she endured hours of hunger, (children’s portion dinners) pain (failed insertion of a cannula to administer antiobiotics, then a reaction to those antibiotics) and being ignored. She was also confused and frightened by talk of a possible mastectomy in a discussion between two health professionals in a conversation in her hearing which excluded her. The audience offered suggestions for how things could be done differently and the scenario was played through again. It also explored the situation from the provider perspective – each interaction always has at least two people and in this one we explored the fears and humiliation of the nurse who had failed to insert the cannula. Alma Digweed from Bentley Community Advisory Council agreed to join the actors on the stage and was the star of the show.
Alma Diggins, Star!
Walking with her drip, begging for help!
Lunchbox Session – Organisational Approaches to Patient Experience
This diverse session included a presentation from Anita Deakin and Carmel Crock, in relation to the Emergency Medicines Events Register (EMER). This interesting and innovative tool is a change management mechanism in that in encourages both clinicians and consumers to report near misses and develop a culture which supports a learning approach to near misses to support a safer patient culture. The Powerpoint presentation is available here, and you can find out more about EMER here.
Next up was James Sherriff, General Manager of St John’s Ambulance and former paramedic. James’ presentation focused on the internal change that St Johns have actively sought within the organisation to ensure front line staff always have the patient at the centre of the care. You can view his Powerpoint here.
The session closed with HCC’s Dr Martin Whitely and Murdoch researcher Dr Norman Stomski describing a key research project they have been collaborating on. HCC provides individual advocacy for mental health consumers who are voluntary. HCC sought to better understand what the advocacy intervention meant for consumers whose patient journey was far from smooth. 60 de-identified individual advocacy cases were written up for research analysis. Martin and Norman’s joint presentation can be viewed here.
Workshop Session – Partnering for Patient Experience
The day concluded with a workshop facilitated by HCC’s Steph Newell. Presenting was Professor Anne Williams on her years of research and development of Patient Experience Tools – known as PEECE and PEECH. Helen Fernando from South Australia presented on the unique and effective Messenger Model that she has developed, and a version of the concept runs at Flinders Medical Centre. The Messenger Model involves the consumer representative providing a conduit for information about health care needs and experiences to reach front-line staff during the episode of care. The feedback about what has gone well or otherwise alerts staff to issues that may be addressed whilst the patient and family are still in the care of the health professional team so that the patient experience can be transformed. Steph Newell explained the key factors of partnership – trust and common purpose. During the workshop session, audience members were encourage to view sections of this video on patient experience and consider the scenarios within the context of the tools discussed – PEECE, PEECH and the Messenger Model.
The Theme, The Crowd
We aligned with the international theme for 2016 Patient Experience – “Connecting for Patient Experience – We are ALL the Patient Experience”